Hazel McHaffie

amnesia

Journey into terror

Scottish Power studio3.30pm and New York journalist, Susannah Cahalan, has just walked into the Power Studio Theatre. She’s beams at the audience, big blue eyes and a dimpled smile – the picture of health and vitality. No outward sign of the terrifying illness: acute encephalitis, she’s charted in Brain on Fire.

Suzanne CahalanShe was just 24 in 2009 when she began to experience vague symptoms – numbness, mental blanks, emotional lability, lack of focus. But she’d just begun her first post-grad job as a reporter, and her first long term relationship, so she initially put it down to the sense of confusion and disorientation of new beginnings. The insomnia, erratic behaviour, mood swings and paranoia worsened however, she had a sense of being outside herself looking down on herself. Convulsions, hallucinations, and increasing paranoia followed, and as she says, ‘My first serious blackout marked the line between sanity and insanity‘.

Diagnosis was painfully slow. Initially she was thought to be ‘suffering from alcohol withdrawal‘. It was only when she was given steroids and immune therapy that she started to improve and a diagnosis of auto-immune encephalitis could be established. And as she admits, it takes a courageous ‘renegade‘ of a doctor to give high doses of steroids in the absence of a clear diagnosis.

Looking back on her behaviour at the time, she perceives it as ‘monstrous‘ and admits it frightens her to think she could have acted in this way. What kind of a person is she? What is she capable of?

How did she cope? Her family and friends were key to her survival, and her natural stubbornness stood her in good stead. And taking up a post-graduate course was her ‘cognitive therapy‘. Now she campaigns for better diagnosis and treatment for others. Knowledge is increasing but there is still much to know in a relatively rare illness. (The first case was named as auto-immune encephalitis in 2007; there are now 13 different forms of it.) 

The chairman, Charles Fernyhough, a psychologist, describes her book as intensely brave, unflinching, moving and thrilling, pacey and vivid. Given her period of amnesia how did she manage to record events so fully?

She employed her journalistic skills to the task, working in three phases. First, in order to give the book a sense of authenticity, she hand-wrote all she could remember before she read or listened to any other reports, using amongst other aids, her own ‘bizarre‘ Word documents written while she was actively psychotic. She’s fully aware that there are inaccuracies arising out of her own faulty memories – eg. she was convinced that she wore an orange name band saying FLIGHT RISK. Such a name band didn’t exist; it was yellow and said FALLS RISK.

Next she read her medical records, and watched videos of herself hallucinating (she was on an epilepsy ward where patients were monitored by cameras). Finally she interviewed other people for their accounts. This last was not without its problem. Her mother, she says, rewrote history, minimising the seriousness – her way of dealing with it. Her father exaggerated things to such an extent that she had to resort to emailing questions to him, the only way he could handle it.

In writing everything up, Cahalan was conscious of her own obsession with health and science. She knew she had to be brutally honest but she aimed to make the difficult science palatable and accessible, and for the finished book to read like a medical thriller. She reads enough of her own dog-eared copy of it to convince us that it is.

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A serious distraction or a perfect gift?

When Christine Lucas wakes up in a strange bed next to a middle-aged man wearing a wedding ring she starts to panic. But in the bathroom she finds photographs which seem to say this is her home and the man is her husband. And the man himself confirms this. Over and over again.

Dr Nash, a neuropsychologist who is seeing her secretly, tells her she has a very unusual form of amnesia following an accident, which has obliterated her long-term memories and made her unable to retain short-term happenings long enough to create new ones. Sleep obliterates everything. Each day Chris is starting with a clean slate.

‘Today is all I have.’

‘… tonight, as I sleep, my mind will erase everything I know today. Everything I did today. I will wake up tomorrow as I did this morning. Thinking I am still a child. Thinking I still have a whole lifetime of choices ahead of me.’

Imagine facing such a nightmare every single morning. Every day shocked to find the face and body in the mirror are decades older than you think you are. Every day having to ask who you are, if you have children, what happened to you. Every day experiencing fresh grief over things that happened years ago.

But Christine is faced with more than simply forgetting. Her world is full of perplexity and confusion. And threat. Her husband Ben seems to be nothing but patient and loving, but in the front of her journal, beneath her name, she has written: DON’T TRUST BEN.

Why is he not allowed to see her journal as it instructs? Is the scrapbook of a past life he has prepared for her different from her own account which she can’t remember writing? Why does he lie to her about their family life, her career, the accident, her best friend? Why does he hide old photographs? Simply reading about her distorted world muddles the brain and makes you doubt your own sanity so clever is  SJ Watson‘s writing in Before I Go to Sleep.

But with Dr Nash’s support (he phones her everyday to remind her about the existence of the diary and to tell her to write in it.) Christine’s journal fills up. She uses it to recreate a narrative of her life and identity, and gradually pieces of the jigsaw slot into place. Reading it gives her a launching pad for the day. Her written account is augmented by vivid flashbacks. But are they real memories? Imagination and truth remain blurred, and even her doctor doubts the veracity of some of her story. To her confused mind no one is completely trustworthy. But how much of their response is protective and how much malign?

Then, just when you start to relax your guard, when you think you’ve sussed what’s happening, wham! In comes a greater terror than anything Christine has experienced before.

It’s a long time since I read any book as compelling as this, never mind a debut novel. Because Watson is new on the literary circuit this year. He’s an NHS audiologist who wrote Before I Go to Sleep in his spare time as part of a writing course. And it’s been a runaway success. Deservedly so. It combines  the authenticity of Deborah Wearing’s true account of her husband, Clive’s, amnesia in Forever Today – A Memoir of Love and Amnesia, with the tension of a Stephen King thriller. I had to keep reading!

Highly recommended if you can spare the time to be hypnotised by a book this close to Christmas. Or maybe it’s the ideal gift.

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